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@ARTICLE{VeldhuijzenvanZanten:120635,
      author       = {S. E. M. Veldhuijzen van Zanten and J. Baugh and B. Chaney
                      and D. De Jongh and E. Sanchez Aliaga and F. Barkhof and J.
                      Noltes and R. De Wolf and J. Van Dijk and A. Cannarozzo and
                      C. M. Damen-Korbijn and J. A. Lieverst and N. Colditz and M.
                      Hoffmann and M. Warmuth-Metz$^*$ and B. Bison$^*$ and D.
                      Jones$^*$ and D. Sturm$^*$ and G. H. Gielen and C. Jones and
                      E. Hulleman and R. Calmon and D. Castel and P. Varlet and G.
                      Giraud and I. Slavc and S. Van Gool and S. Jacobs and F.
                      Jadrijevic-Cvrlje and D. Sumerauer and K. Nysom and V.
                      Pentikainen and S.-M. Kivivuori and P. Leblond and N.
                      Entz-Werle and A. O. von Bueren and A. Kattamis and D. R.
                      Hargrave and P. Hauser and M. Garami and H. K.
                      Thorarinsdottir and J. Pears and L. Gandola and G.
                      Rutkauskiene and G. O. Janssens and I. K. Torsvik and M.
                      Perek-Polnik and M. J. Gil-da-Costa and O. Zheludkova and L.
                      Shats and L. Deak and L. Kitanovski and O. Cruz and A.
                      Morales La Madrid and S. Holm and N. Gerber and R. Kebudi
                      and R. Grundy and E. Lopez-Aguilar and M. Zapata-Tarres and
                      J. Emmerik and T. Hayden and S. Bailey and V. Biassoni and
                      M. Massimino and J. Grill and W. P. Vandertop and G. J. L.
                      Kaspers and M. Fouladi and C. M. Kramm and D. G. van
                      Vuurden},
      collaboration = {m. o. t. S. D. Network},
      title        = {{D}evelopment of the {SIOPE} {DIPG} network, registry and
                      imaging repository: a collaborative effort to optimize
                      research into a rare and lethal disease.},
      journal      = {Journal of neuro-oncology},
      volume       = {132},
      number       = {2},
      issn         = {1573-7373},
      address      = {Dordrecht [u.a.]},
      publisher    = {Springer Science + Business Media B.V},
      reportid     = {DKFZ-2017-01063},
      pages        = {255 - 266},
      year         = {2017},
      abstract     = {Diffuse intrinsic pontine glioma (DIPG) is a rare and
                      deadly childhood malignancy. After 40 years of mostly
                      single-center, often non-randomized trials with variable
                      patient inclusions, there has been no improvement in
                      survival. It is therefore time for international
                      collaboration in DIPG research, to provide new hope for
                      children, parents and medical professionals fighting DIPG.
                      In a first step towards collaboration, in 2011, a network of
                      biologists and clinicians working in the field of DIPG was
                      established within the European Society for Paediatric
                      Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG Network.
                      By bringing together biomedical professionals and parents as
                      patient representatives, several collaborative DIPG-related
                      projects have been realized. With help from experts in the
                      fields of information technology, and legal advisors, an
                      international, web-based comprehensive database was
                      developed, The SIOPE DIPG Registry and Imaging Repository,
                      to centrally collect data of DIPG patients. As for April
                      2016, clinical data as well as MR-scans of 694 patients have
                      been entered into the SIOPE DIPG Registry/Imaging
                      Repository. The median progression free survival is 6.0
                      months $(95\%$ Confidence Interval (CI) 5.6-6.4 months) and
                      the median overall survival is 11.0 months $(95\%$ CI
                      10.5-11.5 months). At two and five years post-diagnosis, 10
                      and $2\%$ of patients are alive, respectively. The
                      establishment of the SIOPE DIPG Network and SIOPE DIPG
                      Registry means a paradigm shift towards collaborative
                      research into DIPG. This is seen as an essential first step
                      towards understanding the disease, improving care and
                      (ultimately) cure for children with DIPG.},
      cin          = {B062},
      ddc          = {610},
      cid          = {I:(DE-He78)B062-20160331},
      pnm          = {312 - Functional and structural genomics (POF3-312)},
      pid          = {G:(DE-HGF)POF3-312},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:28110411},
      pmc          = {pmc:PMC5378734},
      doi          = {10.1007/s11060-016-2363-y},
      url          = {https://inrepo02.dkfz.de/record/120635},
}